Quick Update - Staying on Xeloda

Just an update:

CT Scans showed improvement in lungs and no more cancer in my liver. primary tumor shrunk significantly. Overall regression & stability. My markers keep dancing around in the 40-50 range. My doctor is going by the scans for now.

We also changed my Bone Mets Drug from Zometa to Xgeva. I am staying on Xeloda.

Xgeva is a simple infection given via needle. No more transfusions. Since my bone mets have only been stable while on the Zometa monthly, we decided to try a newer Bone Drug. Studies show they have the same result, but at this point I feel I also need a medication that treats the bone tumors better. I may get radiation on the spots if they are there in June at my next scan (as long as my markers don't fly high)

Drug type: 

Xgeva is a monoclonal antibody that works as a RANK ligand (RANKL) inhibitor.  This medication is classified as a "bone-modifying agent". (For more detail see "How denosumab works" section below).

What Xgeva is used for:

• Prevention of skeletal-related events (need for radiation, fracture due to cancer in the bone, surgery to the bone, or compression of the spinal cord) in patients with bone metastases from solid tumors. 
• Treatment of giant cell tumor of the bone.

SCANXITY

What is Scanxiety?? Well in summary I feel like this guy below:

Its the anxiety you feel when you know you are due for a PET/CT Scan. You feel it weeks before, days before, the day of and the day after. Its all consuming at times.

So that being said, that is how I will be feeling in the next 15 days. I can put on a good show. At work I may seem normal. With friends and family I put on a good "I am fine mask." Underneath it all is a girl screaming her head off and a complete anxious mess at home. I can find ways to cope, but underlying it all is this humming anxiety.

Horrible, absolutely horrible. Of course, I already have had anxiety since 9yr old... so lets layer that scanxiety on top of my already chemically imbalances head. Gonna be awesome...

That being have my first full scan on March 14 since September 29. I have gotten monthly chest X-rays up until January when my doctor & I decided to give my body a break from the radiation since my markers dropped drastically.

By the time I get my first real scan on Xeloda, I would be in my 6th month of Xeloda. The 6th month has been the primal time where my last two treatments failed me. My cancer "PTSD" acts up when I think about it. I am immensely worried that I may have progression and will get less and less time on each new drug.

Yes, this is also very possible, but it is sheer assumption, projection, and catastrophization. Lets look at the facts here: 1. my Tubey in my lung is gone, the fluid is so minimal now 2. I can run without wheezing for the first time in a a year. 3. I have 0 bone pain, which is not the norm. 4. My markers kept dropping then stabilized. My markers rose 2 points two weeks ago, but that could be stable for me.

Of course with any increase in markers or any minor ache, I do wonder is progression simmering and boiling its head to create more tumors in my young body. I wish I could say - "I am always hopeful."
Reality is, my hope comes in waves. I do truly feel grateful to be here still when many of my friends have now passed on. I am also hopeful that I would see a cure one day. I hope the more people know my story, the more people think or pray about me, and all that good karma will come and heal me.

This is the reality of my mind. A mind that was already predisposed to having fear and worry, now it is a reality I have to accept that worry and fear of cancer progression and even the D-word (death) could happen.

This is why I encourage people to share, read this story, and if you donate money think about where that money goes to. Choose to save lives. Enough of us people with cancer blog and write on Facebook these days that Education about Cancer and Prevention are no longer viable funding needs. We need a cure. I am not ready to accept that I will not make it past 5yrs with metastatic disease. I hope to prove the odds wrong.

Xeloda is Working!

Today's Update is brought to you by 6 giant horse pills I take daily - Xeloda. Dear chemo pills, Thank you for working on my cancer. I am finally feeling hopeful as my tumor markers continue to drop with each 21day cycle.

I hope this drug lasts a long time. It can always change, but for now my bets are on Xeloda.

Side effects are tolerable, because I know it is working. My feet are peeling and my fingers are sensitive to the touch. My stomach is constantly rumbling and fatigue is bad. I have been grateful that coffee, b-12 and a healthy diet have helped me stay alert.

Lets keep hoping my markers drop. My ca 15.3 is 56 & my cea us 47. This is the lowest they have ever been. I need my ca 15.3 to be under 35 and cea under 5. If I get that low... I might be NED! Lets hope for some time with no evidence of disease.

It Has Been A Whirlwind

I have had trouble writing & updating my blog. The months of August - November were rough emotionally and physically for our household.

First I have updated my Treatment Page with all my procedures & most important all my treatment and herbal supplementation I have been using (started supplements again 10/2015). 

In August, a close breast cancer friend passed away, she was only 34. She was my first friend or cancer buddy to die from this disease. That same day my Uncle Hank passed away, he was only 54 and was struggling with lung disease. Both of these people were vibrant and would draw people in because their auras were so bright. Yet both of them were gone so young. These two blows hurt. Both left behind amazing families and spouses that I love so very much.

The one that hurt the most was when my Aunt Kerry passed away. I can't really even write about this yet. She was a best friend of mine, a second mom, my godmother, my aunt, my friend, and my first cancer sister. She died after battling metastatic Ovarian Cancer for 6yrs. My Uncle now lost his best friend & there has not been a day that has gone by when I worry about my Uncle.

In the midst of all of these losses, I learned that I had developed Hypothyroidism from the clinical trial for Lucitanib. The lack of thyroid hormone made me crazy, bloated, and emotionally unstable. My hair was also shedding and creating nests in our home. The stress on my body from the trial drug and the losses were starting to show in my physical appearance.

I also learned that my Pleural Metastasis, which I have had since my cancer recurred in the metastatic setting in 7/2013, was more extensive and was unable to be seen well on any scans. My Pleura was a hard shell, capitulating my lung, and causing the chronic pleural effusions. I was sent to a Oncological Thoracic Surgeon to consult to have my lung fixed.

I underwent VATS surgery on 9/30/15. They were unable to inflate my lung in surgery, learning my lung and chest cavity were coated with cancer. A PleurX Catheter was placed in my left lung cavity & I had a tube in my left rib cage. I was devastated. I also learned that the trial was not removing the cancer, but keeping me stable with a compromised lung.

We did biopsies of that tissue and sent it to Prescion Medicine to learn the mutations in my cancer & to see if I am eligible for anymore biologic or targeted therapies and trials. We also reviewed my Foundation One report that was done in 2013 on my breast tumor. We learned that I would be eligible for Ibrance (CDK Inhibitor) or trials with other CDK Inhibitors. We also learned I had a BRIP1 mutation, which is BRCA1 variant, therefore I am eligible for trials with a PARP Inhibitor, which is a very promising drug in the trial phases. It was a lot to take in. We also learned that I needed to get on Chemotherapy... talk about a giant glob of information. My doctor was leaning towards either a PARP Trial or oral Chemotherapy.

When I got all that information about my cancer, I was having to get a visiting nurse come 3x week to drain off my lung. Since the trial did nothing to improve my well-being and cancer, I was taken off the trial & put on oral Chemotherapy called Xeloda. I currently take Xeloda 1,500mg 3x daily. So far Xeloda has cleared out my lung cavity and the pleural effusion is gone. I have been blessed with cracked and peeling hands, cystic acne, fatigue, achy muscles, digestive changes and nausea, because of Xeloda.

Eventually I got used to the PleurX & was able to visibly see that this Xeloda drug was working with the less fluid draining. Thanks to Xeloda, I had the Lung Drain from 9/30/15-12/4/15. It could have been longer, but my treatment was working. My tumor markers plummeted, which has never happened. They are currently 67.5, when they have always wavered between 160-250. Despite side effects of fatigue, nausea, muscle aches, and Hand Foot Syndrome, its worth it if its killing my cancer.

Things did get better & I feel like they are still improving.

We got engaged.
We went to Disney. I rocked the trip with my PleurX Drain.
My cancer is retreating for now. The tube is gone.
I updated my blog & my TREATMENT PAGE.
I was able to take my herbal supplements again.
I am returning back to work after the longest 8months of my life.
We are planning a wedding.
The holidays were excellent, but I missed my friends who passed and my family who passed this summer.

I could get to No Evidence of Disease. I hope I do. I could recur. This is what life is going to be like for me. I probably will update this less. I want to spend time living and not always writing about cancer. I want to update this just to help someone who needs to know some information about cancer & that they are not alone. I have found an online support group of women under 40 diagnosed with Metastatic Breast Cancer & I now moderate a group. This past week our group lost four girls, two of whom I was very close to and I felt another emotional blow. Losses before the holidays are not pleasant. Neither of these women were older than 35.

 It is time for a cure. I am tired of just taking drugs with horrible side effects to prolong my life & not save it. I just hope I get to see the day when cancer is easily treated and we have stage 4 survivors who have lived 20+yrs as the norm.

Luckily, I have been blessed with an amazing in-person familial and friend support network (Kyle has been my biggest support). My goal is to grow old with Kyle and watch us get wrinkles and have fur babies and watch our frozen embryos become babies. Its all I ask.

Famous for a Day

My story is going to be posted on the Voices of Metastatic Breast Cancer Blog. This blog is written by a fellow metastatic lifer, Lesley Glenn. She asked to have me share my story.  My story will be followed by Metavivor, Cure Magazine, Metastatic Breast Cancer Network, Cure Diva, and Living Beyond Breast Cancer.

My story will be live tomorrow on this site: http://voicesofmbc.com/. Please share it. I don't want to share it for fame, but to put more faces to this disease.

Check it out & if you tweet or post on facebook can you please hastag my story with the following hash tags:

#metsmonday, #voicesofMBC, #stageIVneedsmore

 

Hypothyroid = Sluggish Depressed Irritable Blob

I finally got my hypothyroid in check (or I am assuming) and have been put on Synthroid. I have more energy, my hair is not molting all day every day, and I am not as irritable and depressed. So the Thyroid was Fixed. I also was eating everything in site, which is good. I put back on the weight I lost in April due to stress & not eating enough. So R.L. Stine, who clearly is the best kid author for kids with sick minds like myself, wrote a book to homage hypothyroidism.

Now onto the Lung. My pleural effusion has been so chronic & since I had a enlarged lymph node in my chest wall that apparently is the drain to the pleura region, my effusion never got better. Awesome. Since the effusion was blocked by some cancer and had cancer, a rind formed on my pleura around my Left Lung. This rind is a combination of things, dead cancer, possible remains of cancer cells, and scar tissue. Most doctors are calling this scar tissue. That means I will need surgery to remove the "Rind" to free my lung to finally drain the effusion.

Up until 2014, most doctors did not remove the effusions, because most cancer patients (from lung to ovarian to breast to lymphoma peoples) do not get effusions as the ONLY and FIRST site of metastasis. Well lucky me, I am the 2.4% of people who did! Now they know that the effusion can be fixed if this person (me) has a chance at long term survivorship. Awesome, glad I now have another surgery on the table, when the effusion could have been drained in 2013 and that node radiated in 2013.

In the world of cancer, we can never have "hindsight." There is new stuff everyday and doctors are constantly going over new terrain each day when it comes to metastatic cancer and even more uncharted terrain in cancer in young adults. So now we go into the new terrain they know will help.

So this effusion and I have like become one. He is my codependent cancer caused buddy who now won't leave without force. So here is what is gonna be done... and soon. Since I have no symptoms of an effusion, I am visualizing this as an enhancement surgery as seen here:

1. I have no problems breathing. So clearly my effusion is silent and wants to stay there for some reason.
2. I need surgery to remove the rind.
3. Surgery is a typical surgery they have used on Lung Cancer patients & have been using more often on breast cancer, ovarian and lymphoma patients with mets.
4. Its Thorascopic, which means 2-3 small incisions in my left rib spaces with a camera to remove the rind.
5. Remove rind, hope lung re-expands, blow in some Talc to glue my lung pleura to the chest wall.
6. If rind is removed and lung doesn't expand, I get a small gravity catheter put in to drain the effusion until the lung naturally expands on its own. The tube stays anywhere between 2-6 weeks. My surgeon said once it was in for 5mo. I hope I am not with tube for 5mo, but considering how lucky I have been with retaining lymphatic fluid from major surgeries I am not ruling that out.
7. Oh and I have to WALK 30-40min times a day, but I cant drive for 2 weeks, so where the heck will I walk... oh my 0.25mile lap in my condo association 2000x. 

I could go on and on what this entails, but honestly do you even want to know? Probably not & I won't post the link about it, because unless you really want to see gross images of lungs getting peeled open then nope, not posting.

Am I OK? Yes, I am stable. My ca 15.3 (breast cancer cells in blood) dropped from 260 to 111.6. My cea (inflammation marker) (which my trial wants and every doctor despises because it is highly affected by LUNG and THYROID issues) tripled. Scans are Oct 1. I have a feeling they will be stable or maybe better if my lung is fixed by then. Otherwise the only evidence in them are bone spots, which on scans you cannot tell are active unless they grow, but if they are the same they can be dead or stable.

So goals are:
1. Clinical Trial keep killing cancer - done
2. Get Thyroid in Check - done
3. Fix Lung so I can further have no breathing issues
4. Keep eating healthy - yea i am doing that i guess

I have drawn a conclusion that I will be a new Avenger. I am going with Captain Marvel, because she has yet to be cast, so that is what I will become. Oh and I won't be blonde, so Marvel start making her brunette. No I do not want to be Wonder Woman, I want to be cast to be hanging out with Thor and Captain America. Come on Lung lets go... I have goals.

Still Here!

Still here, still on the trial. I have been spending my summer either at doctors, on the sandy beaches, at the gym getting my strength back, or on my couch because of fatigue or nausea.

Lets talk Lucitanib. The trial has been tolerable. My bone pain is gone, which is an excellent sign. Considering I have not blogged since I started the drug, I am going to just give a quick breakdown as to what has happened during each cycle on this trial. FYI I am only on this drug for treatment of my cancer as I can no longer do oral holistic treatments, which in my opinion were only helping ward off side-effects of the other drugs I have been on.

May - Cycle 1 : [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• my blood pressure rose to 129/95, which is normal for the average Joe and high for the average Caitlin, but does not warrant a medication. 
• My heart rhythm and strength remain good. 
• TSH started to rise, but was not high to warrant medication. TSH is 5.4 (normal is under 5)
• I was still in pain in my thoracic region and also upper lumbar, but I just finished the radiation and just started the drug
• Markers: CEA - 140 (normal is under 5); CA 15.3 120 (normal is under 34)

June - Cycle 2: [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• my blood pressure stabilized at the Caitlin HIGH, average JOE normal
• Heart was strong & had great rhythm.... now I know the benefit of exercise, because my heart has been able to stay pretty kick butt through tough treatments. 
• TSH was elevated again, but not to warrant medication. still around 5.4
• Pain was much less in spine region & I was cleared to not just do yoga but lift light weights again as long as I was not in pain. 
• I started to get nausea from the drug. Nausea felt like the flu, lucky for me there are a ton of ways to take care of that - water, ginger, juice, ginger ale, Compazine, rest, snacks, and fresh air. 1st set of scans were done 
• SCANS: Stable, noted exactly where those damn rogue nodes have been for two years... two small nodes on my chest wall were still about 0.5cm in size & I had the pleural effusion. Bones stable. 

• Markers: Were mixed, its hard to see what this drug does to markers & given how my markers respond to treatment in the past - they go all wonky, get alll high and them plummet... but that always takes 4-5mo.  CEA - 150; CA 15.3 112

July - Cycle 3 [dosed daily with trial drug]

• my blood pressure unchanged, but I started getting adapted to my new normal. Less feeling like my heart was pounding & was able to do cardio again, so that helps a bit 
• TSH is rising... we are waiting until it gets into the "hey you have hypothyroidism, time for a referral to an endocrinologist"... TSH was 6. needed to be over 10 to get on any medication or what not.
• No pain, which was AWESOME. Cleared for moderate lifting WOOT and running (meh)
• Nausea remained, started to get tired, but that was all likely due to the thyroid. I was told to monitor for other symptoms. 
• Markers - Mixed, but this time the one that was high dropped and the one that was low rose. You know I can never be normal here. CEA 62; CA 15.3 182
• Fluid around my Left Lung was finally drained off after 2yrs. Hoped it would remain gone. The fluid did not appear cancerous this time and that was a good thing. Was told its a response to either the thyroid or scarring on my pleura for having the cancer in that region for two years. 

August - Cycle 4  [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• SCANS: Stable overall. The nodes in my chest wall had become invisible on scans, so under 0.1mm. The Pleural effusion is back (awesome!), but less as my lung is more visible with less "cloudiness". They saw a 6mm nodule on my lung, which its unclear if that was there before or new, but its newly visible. My bones are stable.
• Markers: My tumor markers have been up down up. The one that rose last month, rose again. The one that dropped last month rose like a few points, but nothing significant as per medical team. CEA 72, CA 15.3 is 211. They believe that the CA 15.3 keeps fluctuating because of the effusion and the hypothyroidism, which they believe are now connected and not related to cancer as there is no lymph node involvement in my pleura sac (lung sac).
• TSH is now 11, so I get a referral for an endocrinologist. In that time, I have become aware that I am cold all the time and then blessed for the hot flashes I get or the hot weather we have been having. Also my hair is coming out like a shedding cat. COOL!
• Pleural Effusion will get to be drained AGAIN. YAY! 

 So in summary, I was hoping that August would kinda put an end to the multiple issues or extra appointments beyond my monthly labs and/or scans. Now I have an endocrinologist in the mix and another visit to the intervention radiologist (pleural effusion drainer) on the calendar.

Have I mentioned that these appointments are all smashed between my palliative care doctor every 6month to evaluate my pain, my original oncologist in NJ to maintain follow-up, my radiation oncologist for follow-up, my OBGYN Oncologist for yearly followup, my dermatologist because every cancer drug has given me acne or some weird skin rash.... This is like the full time job I wish I never got.

Anyways, hope I make it to these appointments. Pray that my next labs show both markers dropping... Labs are due on Sept 3 & scans again on Oct 1.

So here is a detailed update, because I do not want to have to explain it anymore. More updates once I figure out my thyroid.